Re: Re: taping the eyelids

[Guest guest]

Hi Rashad

The only person who can determine

the correct time for surgery is in oculoplastic surgeon. People on this board

are passing on experiences of what happened to them. They aren’t saying “our

child had treatment at age x because that’s what we decided to do”.

Have you spoken to an oculoplastic

surgeon yet? What did they advise you?

I think it would be helpful if I

quote some text from a very good site:

Treatment of

Manifestations

Management requires the input of

specialists including a clinical geneticist, pediatric ophthalmologist,

oculoplastic surgeon, (pediatric or adult) endocrinologist, reproductive

endocrinologist, and gynecologist.

Timing of eyelid surgery is

controversial; it involves weighing the balance of early surgery to prevent

deprivation amblyopia and late surgery to allow for more reliable ptosis

measurements, the latter of which provides a better surgical outcome.

Furthermore, ptosis surgery is hampered by the dysplastic structure of the

eyelids [beckingsale et al 2003].

The surgical management traditionally

involves a medial canthoplasty for correction of the blepharophimosis,

epicanthus inversus, and telecanthus at ages three to five years, followed

about a year later by ptosis correction, which usually requires a brow

suspension procedure. If the epicanthal folds are small, a Y-V canthoplasty is

traditionally used; if the epicanthal folds are severe, a double Z-plasty is

used. To correct telecanthus, the medial canthal tendon is usually shortened or

fused with a transnasal wire.

Recent insights into the causes of

the abnormal lower eyelid positioning allow a more targeted surgical

reconstruction that produces in a more natural appearance [De Cock et al,

unpublished data]. Ten individuals with molecularly proven BPES were noted to

have a laterally displaced inferior punctum (i.e., in the lower eyelid) due to

temporal displacement of the entire lower eyelid. Addition of a simple surgical

step corrected the position of the lower eyelid and its abnormal downward

concavity, the temporal ectropion, and the lateral displacement of the inferior

punctum. This approach eliminates the epicanthus inversus fold without the need

for double Z-plasty [De Cock et al, unpublished data].

The full site is here

It might be an idea to ask your GP

to read through this with you and perhaps explain the medical terms that are

unfamiliar to you.

Another good site (much more

detailed, and very technical) is here.

Having seen an oculoplastic

surgeon they would say something like:

You need to have surgery at an

early age because ……

Or

Hold off having any surgery

until approx X years, because we get better results and there is no danger in

delaying it.

Or

In your case – the ideal

time is X years, but if you feel as parents, and knowing your child, that you

want o delay it or bring it forward by a few months, that’s possible.

So – until a thorough

investigation is carried out, parents will not know what the advice will be.

I hope this helps … it would

be really good if people who reply could explain the reason behind the timing.

For myself, I had to have surgery

at age 2.5 because I was tilting my head too far backwards to see, and it was

affecting my posture. I have met some people who have had to have surgery

at a very young age, just a few months, because their vision was in great

danger of being impaired. There are a couple of boys who have been told that

once they are older, around 10 years, that would be a good time for them.

One lovely little girl was told they needed her to be of a sufficient height so

that they would be successful in harvesting material from her leg. Finally I

have met a lovely young woman who has never had surgery, and she is in drama

school planning to be an actor.

Where abouts do you live?

Regards

Shireen Mohandes

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of rashad s

Sent: 21 May 2010 00:41

blepharophimosis

Subject: blepharophimosis Re: taping the eyelids

Thanks. I am having trouble finding that particular tape that you used in those

pics. Right now I am using paper tape, it seems to be more sensitive. I have

noticed some people getting surgeries done on there infants quite early. Is

that safe? I thought you should wait till about 4 or 5 years of age. Also has

anyone experienced any eye site troubles by letting there infants wait for

surgery. Thanks again to everyone!

> >

> > Hi I am new this site and dont know how this works so bare with me. I

> was wondering if anyone has tapped there infants eyelids open to give

> stimulation to the eye like my doctor suggested? The doctor is worried

> that if my son doesnt get enough stimulation, his brain may shut off the

> vision function which i have heard many times before. Thanks for your

> help.

> >

>

[Guest guest]

Hi Rashad

Taping is something you need to discuss with both your pediatric opthamoligist as well as your ocularplastic surgeon.

Surgery honestly is very dependant on the severity of BPES. My daughter Catalina is 2.5 years old. She has had 2 surgeries. She had her first when she was about 8-9 weeks old. She had her 2nd Feb 9th of this year. Her surgeon told me she was the most severe case he has seen. She has pics under Catalina on this group.

What I have learned here, is that every case is different. I've seen people on here who have never had the surgery and they are adults. I've seen people on here who have had the surgery at 7-8 weeks old. It really depends on the severity of the condition. I've seen people who are 15 and looking at having their very first surgery ever. Like I said, everyone is different.

Talk to your surgeon and opthamologist. If they disagree, tell them you want to talk to them together at the same time, even if you have to do it on a conference call from 1 doc to the other while you just listen in in the background. Always feel free to get a 2nd opinion, esp if you're not sure about the first opinion. maybe the 2nd opinion can explain it to you a little better than the 1st did.

What I would say, is if your child is very young, and you don't like or aren't sure about what he P.O. says, get another opinion. I'm not sure I saw you list what part of the world you are from, but if you mention where you are from in your posts, alot of times, members will be happy to recommend someone close by if they are in your general region, or know someone in that region.

Hope I helped,

Ann, Colorado USA

From: rashad s <rahstar2003@...>blepharophimosis Sent: Thu, May 20, 2010 5:40:40 PMSubject: blepharophimosis Re: taping the eyelids

Thanks. I am having trouble finding that particular tape that you used in those pics. Right now I am using paper tape, it seems to be more sensitive. I have noticed some people getting surgeries done on there infants quite early. Is that safe? I thought you should wait till about 4 or 5 years of age. Also has anyone experienced any eye site troubles by letting there infants wait for surgery. Thanks again to everyone! >> > > > Welcome to the group!> > You might want to check out Naomi's album for some examples of taping> here> <blepharophimosis/photos/album/1232924136/ | Reply to group | Reply via web post | Start a New Topic Messages in this topic (3)

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